My name is Hannah. I am 24 years old and was recently diagnosed with Narcolepsy. Before I move on, I'd like to point out that Narcolepsy is quite different than many of you probably think it is. I don't comically pass out randomly in the middle of walking or talking. Narcolepsy is a neurological degenerative autoimmune disease. It causes my brain's inability to determine whether I should be awake, asleep or dreaming.
My symptoms began to surface when I was 15. I would sleep through nearly all my classes, including tests. My grades were horrendously bad and I had no motivation. My family and I blamed it on depression (as I was terribly depressed) and my parents worked endlessly to help me and improve my quality of life. When I was 17 I stopped taking my medication for ADHD (one of the same medications used to treat Narcolepsy; one I can't take because of the side effects). My depression alleviated and I regained enough energy that I didn't think about my sleepiness again until I was 20.
Like many other Narcoleptics, diagnosable symptoms often begin to show in one's early 20's. It started out as feeling a strong desire to go back to sleep after being fully awake and active for 2-3 hours. If I forced myself to stay awake, the grogginess and aches would pass after about an hour. If I allowed myself to nap, I would sleep immediately and wake up about half an hour later feeling fine.
I thought everyone had this problem. I thought everyone was this tired. It got worse and worse to the point that I was secretly leaving my desk to nap bent over my lap in a bathroom stall to avoid faceplanting on my keyboard.
The sleepiness is painful and debilitating. Researchers of Narcolepsy have aptly described it as the equivalent to a "normal" person staying awake and working for 48-72 hours straight.
The sleepiness was my most noticeable symptom, but since I wasn't caring for myself other symptoms worsened and began to affect my life. Symptoms like false memories, inability to remember whole days at a time, hallucinations, extreme difficulty staying awake while driving, terrifying nightmares paired with sleep paralysis, and Cataplexy (see below to learn more about Cataplexy) were monsters in my life. I still struggle with all these symptoms, but they are less terrifying now that I know what they are and I am developing coping skills to manage them when they happen.
Now that I have a diagnosis I am learning how to take care of myself and my Narcolepsy, but it isn't easy. I am unable to be medicated effectively because the two treatments available to me cause severe depression that make the symptoms worse.
WHAT I NEED FROM YOU:
It's clear to my doctors and me that I need something else to help me and a service dog has become the focus of moving forward with my treatment.
A service dog would be invaluable to my health and safety by helping me maintain wakefulness when I must be awake, giving me a barrier and keep me safe if I must rest (especially in a public place), help me maintain alertness while driving, provide me with reality checks after terrifying and realistic nightmares, and stress reduction which should help all of my symptoms.
There are a dozen other ways a service dog will improve my quality of life, but those are the highlights.
WHY DO I NEED YOUR HELP?
Service dogs are expensive! Holy crap! Applications alone cost $100 each and the dog itself costs upwards of $25,000 to train and place.
The good news: I don't have to pay $25k.
The so-so news: I have to help with the cost via personal funds or fundraising. Many places (especially the ones that are capable of training Narcolepsy Medical Alert Dogs) ask for $10k in fundraising from the person receiving a dog.
$10k is a lot of money and it's strictly the cost of the dog. I will also need to buy high quality equipment for the dog like a seat belt and harness, crate, leads and collars, vests, etc, all of which I can't buy until I know what breed and size of dog I'm going to receive.
Please help me raise money for a life-changing companion.
If you have questions about Narcolepsy or my status in obtaining a service dog, please feel free to contact me. You deserve to understand what you’re helping me accomplish.
To learn more about Narcolepsy:
A short news article on Narcolepsy medical alert dogs (focus on Cataplexy episodes):